Welcome To The Storm… Holding On Tight As I Lose My Sight

Storms can be big or small. Storms can last for hours or days. I’m not talking about the weather here. I’m talking about emotional storms. The storms that occur in your mind.

In the eye of an emotional storm, there is no happiness or light. None. You never knew such a horrible place existed. A storm can begin and end at any time, and will totally screw with what was once a sane mind. I suspect some of you may relate to these stormy moments in your own way.

There is a place that runs deep. A place that is filled with fear, despair, anger, grief, turmoil, and tears. A place I don’t want to go, but, I become so weak in it’s grip. I feel mentally helpless as I move into that storm. It waits for me with open arms and says “Welcome back… I’ve been expecting you.” Do you know of this place? Have you ever been to this place? 

Some storms can be almost debilitating. It can make you feel physically ill as you wonder if you will have the strength you need to come out of it. Again. One more time.

I was on “storm watch” last week. I had an appt. with my Neuro-Ophthalmologist, Dr. Ken Kubis. I knew what he was going to tell me. I thought I was mentally prepared. Yeah….. Not so much. The routine tests, along with the Visual Field test (Ugh…every visually impaired person’s nightmare!) confirmed that my vision had declined quite dramatically since my last visit in December. I took a deep breath trying to shut up the frightened girl screaming inside my head.

Did I already know that my vision had gotten worse? Yes. Did I want to hear it from my doctor? No. Did I try to blame the testing equipment? Hell YES, I did!  …Just like you blame the dryer for your jeans being too tight! It’s called DENIAL!

After more discussion about the life & times of Maria’s vision… my doctor decided to repeat the MRIs and some blood tests to be sure there is nothing else causing my vision loss besides LHON. He has always told me “You are allowed to have more than one thing.” If I do… I trust he will find it. I have completely trusted Dr. Kubis from the day I first met him on September 2, 2013. The day he went to battle to save my vision and he has never stopped. Dr. Kubis is definitely one of the most outstanding and caring doctors I have ever had. The BEST!

When my appointments are over… I always thank my doctor a million times holding back the emotional tears. This time, as I stood there, I was overwhelmed by the fact that I could not “see” this amazing doctor as I did a few months ago. He has disappeared from my vision and I can’t see that reassuring smile anymore. My tears were the beginning of my next storm on the horizon. Dr. Kubis gave me a hug with some reassuring words. He didn’t have to but, THAT’S the kind of doctor he is. The BEST. I turned around and headed straight toward my storm. …Oh God … was this all really happening?

I used to fight off the storms with everything that I had. I was keeping control!! They were not going to bring me down! In reality, it was unhealthy and exhausting for me to act this way. I’m human, not a superhero.

I’m learning it’s okay to walk through these storms no matter how difficult or uncomfortable. Everyone should learn this lesson. Although they drag me into the darkness, I look for the light in the storm’s final hours. I hold on tight and I move forward in my life blinded by LHON. That is until….I hear the words “Welcome to the storm…” and lose my griponce again.

 

 

14 Comments on “Welcome To The Storm… Holding On Tight As I Lose My Sight

  1. You are allowed to crumble, cry and have a few days to try and deal or maybe just not deal at all. If the storm lasts too long……reach out girl because your friends and family will be there to help you walk through it.

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  2. Holy heck Maria – I am so in awe of your strength! Your writing is perfection … Wow I’m so moved!
    Storms suck it big time my friend

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  3. Hey my friend…I knew when we were talking before Bunco & when you cancelled our Friday night get together ) : next time there’s no canceling!!!
    I love you Honey!!…

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  4. You handle your “storms” with courage, grace and humor. You tell it like it is, from the heart with complete honesty. These are the qualities I admire in you. As someone familiar with the with that river in Egypt called de Nile, it can be a comfortable place to hang out in for a while but ultimately it’s how we face reality that what makes our lives meaningful. Namaste, my friend. Peace, happiness, love and laughter always.

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  5. Maria, you handle your storms with such grace and such open honesty. Thank you.

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  6. maria…my heart goes out to you in unbelievable amounts however it is nothing compared to the admiration and respect…and AWE I have in your ability to adjust to the incredible odds, share your feelings about it and most of all, humor,, you are a skilled writer and a brave wonderful young woman. my love to you dear one

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    • ditto my wise words of 2014…my awe and admiration of you only has grown and grown…I am so amazed at your resilience and creativity at dealing with it…you are the star Maria

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  7. You continue to amaze me! I pray for a cure for LHON and that your storms will diminish as well as others with LHON. Keep inspiring us all!

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  8. Dearest Maria,

    What a stirring message…………..You do an incredable job of letting all of us know what it feels like
    to be in the Eye of the storm,….you may never know how many people you are helping get through
    their own storm.

    How wonderful of you to share this very personal and scary time of your life…..I think your blog is
    FANTASTIC…….much much love Erin

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  9. Maria! Your pictures sure do hide this very well. You look great btw. I am glad you are blogging about this. It is always nice to have a nice understanding doctor. I would want this doctor in my life forever, being he was with you from day one. He may not have LOHN but he knows exactly what he is doing to assure you he will do the best he can to make you feel better. I really hope someone can find a solution to this. I do not want to say the wrong thing, just know many of us would drop everything they are doing for you. You have lot’s of love and support.♥

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  10. Maria, I reach out in love and in anguish for all that keeps smacking you sideways. That you get these hits, then stand up to life all over again, makes you my hero. The other heros in my family are your Chris, Bryce and Molly. I love you my Girl.
    Lee

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  11. Maria,
    I can relate to the storm you refer to; it’s what I have dealt with all too often with my depression which joined me with puberty. While I perhaps naively hope it will depart from me on the other side of menopause, in the meantime, I am learning to recognize what triggers a storm, the symptoms of onset, what is helpful and NOT helpful in dealing with it, and what decisions are best made AFTER the storm has passed.

    A saying I believe I heard from you has been helpful, “Fake it til you make it.” Many times, making myself get up and do what I know to be good & right, even when I don’t feel like, helps me get out of the pit.

    Other lessons learned: I can admit when I’m feeling bad. It’s OK. I can ask for help. And one of the hardest, I – who love to help and serve others – have to learn to be still and accept help from others.

    I pray for you, girlfriend! Your front row diva, Varena

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  12. Hi Maria,
    Your blog is amazing – your words are awe-inspiring, powerful and chilling! Ironically, you enable me to see so many things to which I am, though full-sighted, blind…
    Forever RIPPED,
    -Mar
    XOXOXOX

    Like

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